Great Evil, Greater Compassion

It has been a rough last few months for the U.S.

That is probably the understatement of the year. It has been an awful last few months.

Right when we start to think we have the COVID-19 pandemic under control, the enduring virus of racism and injustice comes back to the forefront. It may get temporarily overshadowed by other news stories from time to time, but let’s face it, it never went away. It is a scourge we have dealt with as a country for hundreds of years.

It is hard to put into words the sheer horror of watching George Floyd murdered on video, his life expiring in agonizing fashion for all the world to see. It is not an exaggeration to say that it is the most disturbing video I have ever watched. I was left without words, but many emotions. Horror. Sadness. Frustration. Despair. Anger. Lots of anger.

In times of tragedy, words disappear. I’ve wanted to write something for weeks, but everything I wrote felt incomplete. It still does. This is the best I can do.

Continue reading “Great Evil, Greater Compassion”

The Hope Within

Hi everyone,

I wanted to share a piece that I wrote a few months ago, and had intended to share before the craziness of the last couple months. However, I figure it’s more relevant now than ever!

This is a story about my spiritual journey – the good and the bad, the ups and the downs. Faith has sustained me in some of the darkest moments of my life. Without it, I wouldn’t be where I am today. I wouldn’t have peace. I would be a rudderless ship on a stormy sea, devoid of hope. It’s as simple as that. But the path to get to this point was not an easy one.

Please share with anyone who might benefit from hearing this message.

 

 

 

Quarantine Reflections

When I lived in Boston, it became a running joke that I was an accidental trend-setter. Every neighborhood I either lived or worked in became popular as soon as I left.

In 2008, I lived in an absolute dump of an apartment on Boylston Street, right behind Fenway Park. (It sounds cool on paper but trust me, it was a dump.) A year later, I moved out, and almost overnight, luxury apartments and restaurants popped up out of thin air.

In 2010, I was working for Thomson Reuters in Boston’s Seaport neighborhood. At the time, the building complex I worked in, a cluster of 100+ year-old brick buildings, was surrounded by lifeless parking lots. There were only two or three bars nearby. I left to go to another job, and once again, a new neighborhod pops up out of thin air, and is now one of the busiest places in the city.

Same thing with Oak Square, Brighton and Central Square, Cambridge.

Why am I telling you this?

Continue reading “Quarantine Reflections”

Rare Disease Day 2020

Although Rare Disease Day (Feb. 29th) has come and gone, the afterglow remains. It is one of my favorite days of the year now, right up there with Christmas, Easter, my birthday, and any day when I have a fantasy baseball draft.

I always try to attend or take part in a Rare Disease Day event when possible. This year, I had the honor of participating on a panel with my fellow rare disease advocates at MassBio’s Rare Disease Day celebration on Friday, February 28th.

It was a whirlwind of a day, but tremendously gratifying. To be in a room full of rare disease advocates, family members, state representatives, industry and nonprofit leaders, and other stakeholders was an empowering experience. We represented dozens of different diseases, but shared one purpose: to celebrate those living with a rare disease and to raise awareness for the thousands of diseases that often are forgotten and overlooked.

Continue reading “Rare Disease Day 2020”

Seven Years

Monday marked the seven-year anniversary of the passing of my former coworker and dear friend, Carly Hughes. It’s hard to believe that it’s been that long. I had to double check. But it’s true. Seven years.

I was afraid that as the years passed, I would forget her. Although I may not remember exact conversations, I remember how she made me feel. She always made me laugh with her pranks and tall tales. She also knew how to get under my skin, in a way that was both effective and non-threatening. I still laugh thinking about how mad I got when I came to work one day and she had turned my desk around to face in the opposite direction.

Carly was a caring soul, one who always looked out for other people. There are many stories of her heroic dedication to her friends. Most of all, she knew how to be there for someone going through a tough time. She understood the importance of physical presence in an era when we live our lives behind our devices.

In the process of writing my book, I came across notes and old emails that helped take me back to 2011, when she joined Visible Measures and our friendship took off. By jogging my memory, these notes allowed me to live in the moment, as if it were happening all over again. I still to this day have not seen anyone drink a large Dunkin’ Donuts Iced Coffee as fast as Carly.

I still think about her often. Her passing feels like a lifetime ago, but I’m happy that the memories remain, as does her legacy. Words can’t adequately express what she’s meant to me. (I tried.)

There is a foundation named in her honor, and on the website are several stories about her that will warm your heart.

I’ve accepted that I’m never going to understand how someone so full of life could be taken from us at 24 years of age. Only God can answer that. But I’m happy to have her as a guardian angel, watching over me and giving me encouragement when I need it.

Just leave my desk alone, Carly.

 

Crossroads

I was going to write an end-of-decade wrap-up last week. I was, I swear. Then I kept procrastinating, and procrastinating, and procrastinating, and next thing I know, it’s a new decade.

Oops.

I have to admit, I am not a big fan of contrived wrap-up posts. I tend to write only when inspired, which is on average about once per month. I don’t like to write just to write. But I had to at least acknowledge the conclusion of the 2010s. The decade was only about a third of my life, but for all intents and purposes, it was a lifetime.

At no point in the 2010s was I asymptomatic. It’s hard to wrap my mind around this fact, but I dealt with symptoms of my disease for the entire decade.

I can no longer remember what it was like to have full mobility, with no second thoughts about walking or running or climbing stairs. I don’t remember what it’s like to live spontaneously. So much has changed in just ten years: Continue reading “Crossroads”

Pete’s Legacy

The notification that I had been dreading for five years popped up on my phone Monday afternoon.

Pete Frates, ALS advocate who helped turn the ALS Ice Bucket Challenge into a worldwide phenomenon, had passed away.

This news did not come as a surprise. But regardless of whether or not it was expected, the news pierced my soul. It hurt. I felt like I had lost a good friend, even though I never met him.

I had followed Pete’s story ever since I first learned about the ALS Ice Bucket Challenge in the summer of 2014. Even as his physical condition deteriorated over the years, his spirit remained defiant. His perseverance through hardship was the example I needed during an incredibly difficult time in my life.

Continue reading “Pete’s Legacy”

Unsung Heroes

November was National Family Caregivers month. Which means, of course, that I waited until December to talk about it! But better late than never. It’s an important topic.

The premise of the month is to celebrate those who care for loved ones in need of daily help. The person may be aging, disabled, or some combination of the two.

It is so great that there is a month dedicated to caregivers. They are deserving of the recongition, as caregiving truly is a sacrifice of time, energy, and emotion. When you hear of someone living with a disease or disability, people often think of the person living it. But it has an impact on everyone, including friends and family. Especially family.

Continue reading “Unsung Heroes”

A Sense of Urgency

I reached a personal goal the other day! I finished writing the end of Part One of my memoir. (It will be a two-part book).

Only downside? My goal was to get this far by September….2018. Oops.

I am on schedule, give or take a year. Ok, ok, so it happened a little slower than I had hoped, but I had a perfectly good reason for falling off. I was busy! Busy with my job, attending conferences, going to doctor’s appointments, buying a new wheelchair, fighting insurance, getting my septum un-deviated. Although mostly it was the job. It’s a lot of work, but I enjoy what I am doing so I have no complaints there. It’s just that at the end of the day, I am usually too fried to want to write.

In the last few months, I have maximized my down time on weekends to catch up on writing. This has worked out much better than trying to write at night during the week. I am more productive writing in two days than I would have been if I forced myself to write a few hundred words each day.

Continue reading “A Sense of Urgency”

The 2019 Ralph and Theresa Anselmo Resilience Award

Hi everyone,

Thank you so much to everyone who donated last year to the first-ever Ralph and Theresa Anselmo Resilience Award. The response was overwhelming! I had hoped to fund one award and raised enough to fund two. I am so grateful for everyone’s support. It means so much to my family and I.

If you would like to learn more about last year’s recipients, Hannah and Katherine, Northeastern did a great job sharing their stories:

https://news.northeastern.edu/2018/12/10/heres-what-one-northeastern-graduate-is-doing-to-help-students-handle-their-medical-expenses/
I am happy to announce that the award is coming back for Year 2! Here is a link to the GoFundMe page: https://www.gofundme.com/f/2019-anselmo-family-award

This year my goal is to fund two $1,000 awards for students registered with the Northeastern University Disability Resource Center. Any amount of support would be greatly appreciated, even if it’s just sharing the GoFundMe link.

I ended up raising over $2,800 last year, and the remaining $800 will be allocated towards this year’s awards. If I raise more than my goal, I will allocate it towards next year. Either way, your donation will be put to good use!

With your support, we have already been able to positively impact the lives of two students. I hope to make this an annual award that can help students for years to come!

For those learning about the award for the first time, here is the description:

The Ralph and Theresa Anselmo Resilience Award is an award that I have created at Northeastern University (my alma mater) in honor of my parents, Ralph and Terry.

The goal of this annual award is to provide monetary assistance to a student (or students) registered with Northeastern’s Disability Resource Center  (DRC). Although when I attended Northeastern I did not experience any of the symptoms of the muscle disease that I am living with today, it is a resource I would have used had the timing been different. I have met a handful of students registered with the DRC over the years, and they are some of the kindest, most driven students I have ever met.

As someone living with a progressive disability, I have benefitted from the support of others who have enabled me to achieve my goals and dreams, which included going back to school full-time to get my MBA. Many people have helped me along this journey, none more so than my parents.

My mom and dad have been instrumental in empowering me to succeed, even as my physical condition has deteriorated. They provide me assistance and support without ever asking for anything in return. My resilience today in facing my disease would not be possible without their help.

In the spirit of the example set by my parents, I want to help others achieve their goals and dreams. Specifically, I want to help Northeastern students registered with the DRC. The intent of the award is to provide a little more peace of mind to the recipient, whether it’s helping to purchase a piece of adaptive equipment they may need for the classroom, or putting the award towards books or room and board. How they decide to use the funds is at their discretion.

I am a firm believer that anyone of any ability level can do anything they set their mind to. However, we are only as successful, we are only as strong, as our support system around us.

Without my parents, I wouldn’t be where I am today. It is an honor to name this award after them!

Award Parameters:

It is a one-time award of $1,000 each for two students. Any funds raised above and beyond the goal will go towards future awards. I will keep everyone up to date on how the funds are allocated.

Eligibility:

–          Any Northeastern sophomore, middler or junior year student with a GPA above 2.0.

–          Must be registered with the Disability Resource Center.

–          Student must provide a statement of what they plan to do with the award and why it will help them on their college journey.

How the funds can be used:

–          The award can be used on anything school-related, such as: tuition, an assistive technology device, books or room and board.

I will follow up once the award has been announced. Thank you in advance to everyone for your support!